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February 2015
In Brief
Star Power: The Effect of Angelina
Jolie’s Personal Story of BRCA1
Mutation on Testing Rates among
Commercially Insured Women
Lina Walker
AARP Public Policy Institute
Pamela Morin
Optum Labs
Following Angelina Jolie’s May 2013 op-ed article in the New York Times, BRCA testing rates
increased among women enrolled in a large U.S. health insurance carrier. Her story heightened
awareness of BRCA mutations and probably contributed to those higher testing rates.
Background
Angelina Jolie published her personal story of
testing positive for a harmful mutation in the
BRCA1 gene on May 14, 2013, in the New York
Times. The BRCA1 and BRCA2 genes produce
proteins that protect the stability of a cell’s genetic
structure. When these genes are altered in a way
that prevents them from functioning properly, it
increases a woman’s risk of developing breast or
ovarian cancer.1 Because of her positive test result,
Jolie chose to have a preventive double mastectomy,
even though she did not have a diagnosis of breast
cancer.
Angelina Jolie wrote:
My doctor estimated that I had an 87 percent
risk of breast cancer and a 50 percent risk
of ovarian cancer … I wanted to write this to
tell other women that the decision to have a
mastectomy was not easy. But it is one that
I am very happy that I made. My chances of
developing breast cancer have dropped from
87 percent to under 5 percent. I can tell my
children that they don’t need to fear they will
lose me to breast cancer.
Widespread Reaction Following Jolie’s Story
Given her iconic celebrity status, media coverage of
her story was immediate and widespread, and the
coverage lasted several months. Her story lit up the
social and entertainment media outlets, and it was
featured prominently in newspapers around the
world.
Her story also prompted a surge in the number of
people seeking information about BRCA testing and
mastectomies. On the day of her announcement,
Wikipedia searches for BRCA1 shot up to nearly
30,000, compared with just under 800 searches
the day before. Page views for the National Cancer
Institute’s fact sheet on preventive mastectomy
spiked to more than 69,000 views that day, compared
with only 87 views the previous Tuesday. Jolie’s story
also increased referrals and BRCA testing at cancer
clinics in Canada and the United Kingdom.
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February 2015
Increase in BRCA Testing
Rates in the United States
Our study is the first to
document an increase in
BRCA testing rates among
women enrolled in a large
U.S. health insurance carrier.2
Between April and May
2013, BRCA testing rates
(reported as number of tests
per 10,000 women) increased
by nearly 40 percent and
remained elevated for the rest
of the year. The number of
tests rose from about 1,400 in
April to more than 2,000 in
May (see figure 1).
Figure 1
BRCA Testing Rates Increased in May 2013 and Stayed
Elevated
Jolie’s announcement was
published in the second week
of May 2013. Our study shows
Source: Based on 2013 claims data from Optum Labs for women ages 35 and older.
that the spike in testing rates
occurred during the week of
her announcement. Two other
news events could have contributed to higher
Figure 2
testing rates at that time; however, given the
Increase in BRCA Testing Rates by Age and
patterns in the data, we conclude that the spike
Race/Ethnicity
3
was largely attributable to Jolie’s story.
Women Similar to Jolie More Likely to Get
BRCA Testing
After her story was published, twice as many
women without a cancer diagnosis had the test,
compared with women with a breast or ovarian
cancer diagnosis. These women were probably
concerned about their risk and sought testing for
reasons similar to Jolie’s. Interestingly, before Jolie
published her story, the reverse was true—more
women with those cancer diagnoses got the test.
In addition, women who were white, Hispanic,
or 64 years of age and younger were more likely
to get the test than older, black, or Asian women
(see figure 2).
Source: Based on 2013 claims data from Optum Labs for
women ages 35 and older.
Discussion
Although media coverage of Jolie’s story
heightened awareness of the elevated risk of
breast cancer with the BRCA gene mutation,
its coverage of the rarity of having the harmful
Note: The percentage increase reflects the difference in
the four-month BRCA testing rates before and after Jolie’s
announcement.
2
BRCA mutation was much more limited. Only a third of the stories in
traditional elite newspapers mentioned the rarity of the mutation in
the general population.4 On average, only about 1 percent of all women
are likely to have the mutation; consequently, genetic testing is not
appropriate or recommended for all women.
1
See fact sheet on BRCA by National Cancer
Institute at: http://www.cancer.gov/cancertopics/
factsheet/Risk/BRCA.
2
This In Brief provides a synopsis of our results.
We refer readers to Insight on the Issues 2015:100
for a fuller discussion of our findings, data
limitations, and implications.
Nevertheless, Jolie’s story shined a spotlight on and increased
conversations about breast cancer. Before she shared her story, many
women were probably unfamiliar with the risks associated with
inherited BRCA mutations. Her experience facilitated conversations
between women and their doctors or genetic counselors about testing
and preventive measures. Those conversations enable women to make
better-informed choices about their health care, which may save their
lives or—at least—reduce their risk of cancer.
3
The other two potential influences are (a) news
related to the U.S. Supreme Court hearing and
ruling on the case against Myriad Genetics, which
was the company that had a monopoly over BRCA
genetic testing at that time, and (b) a clinical
expert panel release of guidelines that clarified
for whom it is clinically appropriate to obtain a
BRCA test.
4
Kalina Kamenova, Amir Reshef, Timothy Caufield,
“Angelina Jolie’s Faulty Gene: Newspaper
Coverage of a Celebrity’s Preventive Bilateral
Mastectomy in Canada, the United States, and the
United Kingdom,” Genetics in Medicine 16, no. 7
(2014).
In Brief IB 221, February 2015
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www.aarp.org/ppi
For more reports from the Public Policy
Institute, visit http://www.aarp.org/ppi/.
aarP’s Public Policy Institute conducted this study using the Optum Labs database. The retrospective administrative claims data utilized in
this study include medical claims and eligibility information from a large national u.S. health insurance plan. Individuals covered by this health
plan, about 28.2 million (51 percent female) in 2013, are geographically diverse across the united States, with greatest representation in the
South and Midwest u.S. Census regions. The health insurance plan provides fully insured coverage for professional (e.g., physician), facility
(e.g., hospital), and outpatient prescription medication services. all study data were accessed using techniques that are in compliance with the
Health Insurance Portability and Accountability Act (HIPAA) of 1996, and no identifiable protected health information was extracted during the
course of the study.
3